Son needs medical treatment

[hugabearjo]

Any ideas? My son has CRPS a chronic pain disorder. They want to put him in an inpatient intensive therapy program for 3-4 weeks. They say it will cure him. This is a problem we have been fighting for 2 years.

Problem-
I am a single mom. I just graduated with my RN and there are no jobs in my area. I had an interview last week and one on Monday so I am hopeful but I will have to dig out of the hole I am in once working. I have a private policy that I pay $659 a month (just jumped almost $200) for which is killing me at this point as my savings is drained... I lived on it for 3 years so I am pretty proud of that but we have come to the end of the rope.

Biggest Problem-
MY portion of the treatment they want to give him is $5000 and I don't know where or how to come up with that kind of $$$$ I am having a yard sale and getting rid of years of accumulated junk... I literally have touched every piece of everything in my house and evaluated can I sell it. This will hopefully pay for the premium next month. Any other ideas to raise the funds.... I know he needs the treatment but, don't know what to do about it, if I can't pay for it. So frustrating to have to stress about getting your child the medical care they need.

Thanks for listening-

 

[SandrA9810]

If it's a chronic disorder, have you looked into state funded health care programs for kids?? Many times they come home with stuff like that from school. And they're relatively cheap. Have you talked with the hospital about a payment plan or a reduction in pricing??

Not every one is rich, and 5,000$ out of pocket could hurt the lining's of a lot of people's pockets. (did that make any sense??). Any case, what other avenues have you pursued. How sure are you of this suggested treatment?? I'm just wondering if other cheaper avenues have been pursued.

I only know what I've read right now online. And I see early treatment is the best to prevent it. But 3-4 weeks session just blows my mind, and sounds rather frightening to me.

 

[hugabearjo]

Thanks.... he actually has the state insurance as secondary but they don't recognize the diagnosis and won't allow it. ugh...... early treatment is best that is why we are at the end of the road..... he is on 3000 mg of gabapentin a nerve drug and it knocks him for a loop and makes him sleepy and dingy.... and ugh... the pharmacist and other medical people I have talked to are amazed at that high of a dose. We do have a consult Tuesday for another treatment like a nerve block but kills the nerve, but the docto isn't hopeful this will work because it has been so long..... We were never absent from care, followed the docs orders to a T yet, it might be too late even though we see doctors several times a week. Praying it isn't too late. The only other treatment is this extreme therapy..... It was described to me as an alarm clock stuck going off. It served a purpose at a time (his trigger was surgery to remove some built up tissue that didn't belong in his foot. ) But, now it is stuck on. So they believe (the best I understand) that by working it over and over a day... like 5 hours a day of PT/OT causing more pain to then be pain free because the body resets itself....

Been to too many doctors at this point and they all shake there head and smile. '

Sorry so long and to vent. I am very frustrated.

 

[SandrA9810]

I can understand your frustration.

My brother has very tight muscles in his legs, and his feet are turned inward, like the bottoms touch each other. He spent years and years at the shriners with braces and other things to try to stretch his legs out to walk, and get his feet in the right position.
He loved to get up and walk, but could only take a couple steps without holding on to something. So he mostly crawled.
When he finally was about 18-20, that's when they decided they might go for more radical treatment, using muscle relaxers injected or surgery to help stretch them out. But it was pretty much too late at that point. His joints and muscles were pretty much set for life by then.

 

[SandrA9810]

How many friends/family do you have that live locally to you??

A common thing I see among friends, or even family members trying to raise money for a reason, is they'll hold a car wash. Sometimes at a gas station/corner store or their house if it's on a main road.

You could do 2-3$ a car or donations only. Sometimes donations will get you a lot more than setting a price. Often times in high school, a trucker would pull up with his cab and pay like 2-3 times a normal price, just to have a bunch of kids hand wash it. Of course it was always fun climbing on it to get to the top.
Or if your boy is old enough, ask his friends if they want to help. Give them like 10-20 bucks each with a couple of 5$ pizzas at the end of the night.

 

[Cindyrellablue]

One of my niece's classmates has leukemia and today, the main shopping street in our town has stores raising funds as a sidewalk sale.

We were very excited and although did not purchase anything, we donated at one of the shops.

You may be presently surprised by the people and businesses in your community.

 

[shaylahc1]

I would be leery of any program that promises to "cure" someone in 3 weeks of a chronic problem! Exactly what kind of cure is this? I know it's not the same, but my DD was diagnosed with dyslexia when she was 6 and you'd be surprised at how many places claimed that for $10K or more, they could "cure" my DD of her dyslexia! Really? Last time I checked, dyslexia is a neurobiological disorder and there is no cure! So I am very, VERY suspicious of any place that promises miracle cures. A chronic disease is just that, chronic. If your son has been battling this problem for 2 years it's very unlinkely he can be cured in 3 weeks. So my advice is PROCEED WITH CAUTION. A lot of people prey on a parent's love for their child, making false promises, they know parents love their kids and will do anything to help them.

That being said, I agree with what the PP said about fundraisers. Have a bake sale, host a car wash, put little jars at local businesses where people can donate. You could even sell some items on Ebay or Craigslist.

I am sorry your son is sick. I have Lupus and it's something I wouldn't wish on anyone, the thought of a child living in chronic pain makes me very sad

 

[dfchelbay]

Check into Fibromyalgia too. It sounds a lot like what your son suffers from. Maybe there is information online about causes and treatments for it. You may find alternatives to what you're being told now as far as treatments, and can ask questions and follow ups with your doctor. Just thought more information might help. If it fits with some of your son's symptoms, ask his doctor about this too.

 

[kandeebunny]

As someone who was diagnosed with a chronic pain condition very young in life, I caution you against any "cures."

Have you looked in to alternative medicine? Have you gotten a 2nd and 3rd and 4th opinion?

I got 4 opinions, we know whats wrong with me, but it is rare enough that their attempts at "cures" actually made me MUCH sicker, and have had permanent effects.

As for funding this treatment...have you looked in to research programs at your hospital or at a University/teaching hospital? Have you contacted the diseases nation foundation for ideas? Have you spoken to the hospitals charitable giving department?

Best of luck to you both.

 

[hugabearjo]

Great ideas. I will make some phone calls tomorrow. As for being leary believe me I am. However, this is the third specialist who has recommended this treatment. There are only 5 Hospitals that do do this treatment in the country. I happen to live sorta near 2 of them. Seattle Children's Hospital and Emanuel hospital Portland, Oregon. We live in Eastern ORegon so they are kinda close but not on our back door steps. Believe me, when they first suggested it my hackles went up and I said no way is my child going to be away for 3-4 weeks..... then I researched it and found that they have a 90-95% success rate. To not see my child in pain would be a God send. It is frustrating to me that it all falls on my shoulders his dad is supposed to pay half of all incurred medical bills, but he hasn't the ever meet that obligation (last eleven yuears anyway,

Sorry for the vent.....

 

[wildfan1473]

We have done several fundraisers for my niece who has a terminal disorder.

Is there anyone organization you are a part of who might be willing to sponsor a fundraiser? Church, school, work, etc. Or even an organization your parents (if they are local) may belong to. Silent auctions have been our biggest fundraisers we have done. They are a huge undertaking, but very beneficial.

Our Applebee's, Culvers and Papa Murphy's Pizzas are always doing fundraiser for local families with cancer and other high-cost treatments.

Pancake breakfasts usually do well also. Bowling fundraisers are a lot of fun, then you may be able to do raffle drawings or an auction there. Be sure to check your state gambling laws!

Check with Fraternal organizations such as the Knight of Columbus, or the VFW or American Legion to see if they can help out.

Lastly, delegate. Pick one or two different fundraising options, then find a friend who is willing to make some phone calls on your behalf.

Good luck. I have done many of these fundraisers, feel free to pm me if you need any more ideas or help.

 

[Hannathy]

Have you discussed with the hospital about a payment plan?
If you can show them you will be increasing your income greatly with getting your RN a lot of hospitals are willing to set up plans to repay the money.

Have you approach any family yours and the fathers? I know I would be more than willing to help my nephew if he needed medical care.

 

[dfchelbay]

Great ideas. I will make some phone calls tomorrow. As for being leary believe me I am. However, this is the third specialist who has recommended this treatment. There are only 5 Hospitals that do do this treatment in the country. I happen to live sorta near 2 of them. Seattle Children's Hospital and Emanuel hospital Portland, Oregon. We live in Eastern ORegon so they are kinda close but not on our back door steps. Believe me, when they first suggested it my hackles went up and I said no way is my child going to be away for 3-4 weeks..... then I researched it and found that they have a 90-95% success rate. To not see my child in pain would be a God send. It is frustrating to me that it all falls on my shoulders his dad is supposed to pay half of all incurred medical bills, but he hasn't the ever meet that obligation (last eleven yuears anyway,

Sorry for the vent.....

Go to Court and have it enforced. The Court will make his father pay what he has already been Ordered to pay. Maybe having his paycheck garnished to provide for his child will get your son the medical treatment he needs and deserves the right to have. I wouldn't give this deadbeat a second thought. Just let the Court handle him.

 

[Hannathy]

Go to Court and have it enforced. The Court will make his father pay what he has already been Ordered to pay. Maybe having his paycheck garnished to provide for his child will get your son the medical treatment he needs and deserves the right to have. I wouldn't give this deadbeat a second thought. Just let the Court handle him.

Yes I agree!

If you haven't why not? I never figured out why woman don't do this. He should be paying. Why should others give money if he won't. Start with him.

 

[bumbershoot]

Have you looked in to alternative medicine?

Especially for something as mysterious and nervous system based as this, definitely seek out the alternatives. Start with *gentle* chiropractic.

 

[hugabearjo]

Trust you me... I would make his father pay if I could.... he chose to quit his good state job and work for temp agencies. It took years just to track him down for CS. He is court ordered to cover them on insurance too if it is offered by his employer- well the courts determined that it was too expensive for him to have to pay. So I have to because no one is going to say mine is too expensive, (well they probably would but then my kids would have no coverage and I can't risk that with my son's condition. ) They also told me to keep track of the medical bills (his half) and when the kids are raised then take him to small claims court for it.... ugh.... and small claims wouldn't work I am sure the amount would be too great...by the time the three kids are raised.....


THank you, I did talk to my church today and we will be looking toward a fundraiser there. so hopefully that will work out. I will just keep praying and Looking.... I haven't talked to the hospital yeat because they told me to figure out what my insurance covered. Then call them back.....

Thanks again fro all the support. I do appreciate it.

 

[dfchelbay]

Trust you me... I would make his father pay if I could.... he chose to quit his good state job and work for temp agencies. It took years just to track him down for CS. He is court ordered to cover them on insurance too if it is offered by his employer- well the courts determined that it was too expensive for him to have to pay. So I have to because no one is going to say mine is too expensive, (well they probably would but then my kids would have no coverage and I can't risk that with my son's condition. ) They also told me to keep track of the medical bills (his half) and when the kids are raised then take him to small claims court for it.... ugh.... and small claims wouldn't work I am sure the amount would be too great...by the time the three kids are raised.....


THank you, I did talk to my church today and we will be looking toward a fundraiser there. so hopefully that will work out. I will just keep praying and Looking.... I haven't talked to the hospital yeat because they told me to figure out what my insurance covered. Then call them back.....

Thanks again fro all the support. I do appreciate it.

Keep everything up to date with the Court (Friend of the Court too, for minor children) At some point, his tax return refund will be red flagged and not mailed to him, but instead be sent to the Court, and then on to you. Something is better than nothing. Keep your head up. Don't forget about the Ronald McDonald House, you can stay there for free, while your son is in the hospital for all those weeks.

 

[Tink-aholic]

Unfortunately, if someone is determined not to pay CS, there are several ways to go about it. However, if your child gets Medicaid or is on any other welfare (something to look into) program, the state will go after him to be repaid. It could take decades, but that debt doesn't go away and is not dischargeable in bankruptcy (unless you go through one of those private agencies).

Good luck.

 

[cm8]

Trust you me... I would make his father pay if I could.... he chose to quit his good state job and work for temp agencies. It took years just to track him down for CS. He is court ordered to cover them on insurance too if it is offered by his employer- well the courts determined that it was too expensive for him to have to pay. So I have to because no one is going to say mine is too expensive, (well they probably would but then my kids would have no coverage and I can't risk that with my son's condition. ) They also told me to keep track of the medical bills (his half) and when the kids are raised then take him to small claims court for it.... ugh.... and small claims wouldn't work I am sure the amount would be too great...by the time the three kids are raised.....


THank you, I did talk to my church today and we will be looking toward a fundraiser there. so hopefully that will work out. I will just keep praying and Looking.... I haven't talked to the hospital yeat because they told me to figure out what my insurance covered. Then call them back.....

Thanks again fro all the support. I do appreciate it.

Does this hospital not have a "charity/hope" program that can kick in the $$$ for his treatment? Also, not trying to get in your business, but did you apply for SSi for your son? I know I read that he is already on the state medicaid insurance, so it would seem that he would be eligible for it. I hope that you get the assistance that you really need for your son's treatment Chronic pain sucks

 

[judy21049]

My best friends daughter, Taylor has CRPS. It was awefully painful and her foot turned totally purple. Her mom took her to Boston Childrens Hosptial where they have a special unit for this disorder. After 5 or 6 weeks of intensive therapy she got the use of her limb back. It doesn't really go away she will always have to do certain exercises. But they work magic there. If you go to their website, there is some useful imformation. It takes weeks or sometimes months to get a space in these programs. The sooner you get treatment the better. Good Luck getting money from the dad. Take him to court, your childs health is worth it.